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Sick for Decades: A Celiac Story

Over Three Decades Of Symptoms

I’m not unique in having lived for decades with undiagnosed celiac. Sara experienced celiac symptoms for approximately 33 years before discovering that gluten was behind her issues. She remembers getting sick after meals as a child—-frequently! Her parents and sister thought she was just trying to get out of doing the dishes because she made her exit to the bathroom while others cleaned up. (Boy does this sound familiar!)

During the year that Sara turned 26, pain sent her to the ER three times. They told her the pain was due to gas (at first). But when pain required a third visit in just two days, she was admitted.

Sara experienced a burst appendix just a year earlier, requiring emergency surgery. She was now told that she had the gallbladder of an 87 year old. It needed to come out.

After surgery, she was sent home with the prescription to follow a BRAT diet: bananas, rice, applesauce and TOAST! She still got sick after eating, even though she was limiting herself mainly to rice, applesauce and her favorite food, artichokes.

She Suspected That Food Was Behind Her Symptoms

Six months after gall bladder surgery, and all healed, Sara was told she could follow a normal diet. She was working on a cruise ship at the time and wanted some of that yummy food they served. Coconut shrimp. Garlic bread. But she continued to experience diarrhea after eating.

For those of us who have lived this, by now it seems obvious what the culprit was, but how many of us made that connection while we lived it? I know I sure didn’t.

Sara found it easier to go back to a simple diet when she switched jobs from cruise ship to teaching. She had been aware of foods that seemed kinder to her system, including lots of artichokes. She felt fine.

She felt fine—–until she met her (now) husband. Sara started going out to eat more with her new date, sharing in those foods that he liked. The result? She got sick on their third date. Sara shared with me that she got sick ON the date, not after. She had no clue what was going on.

Sara went back to her simple diet of foods that didn’t bother her quite so much. Yet she still found herself running to the bathroom every day after lunch. As a classroom teacher, this wasn’t easy to do.

Advocating For Her Own Health

Sara ended up having to take time off work. Her days became filled with doctor visits, tests and follow-up visits. She requested a test for celiac after reading about it through her own research. Test results: Positive. The biopsy confirmed it: Celiac. 

Oh how I wish more doctors would come up with this test request on their own!

How many are like Sara, knowing food is behind symptoms somewhere and somehow, but not knowing what and why? How many are restricting themselves from more than they need to be, when all they need to remove is gluten? How many are not restricting themselves as much as they need to be, continuing to harm their health because they are not removing ALL gluten?

Gluten Gone = Symptoms Gone

Once gluten free, Sara said, “Everything changed.” Brain fog, stomach issues, bathroom issues—gone. Memory and attitude issues—gone. Eczema and skin allergies—gone. “Even my family now believes that this is a real thing—they have seen the difference first hand.”

Sara, like those of us who lived an extended period of time without answers, wishes people would realize celiac is a real thing. We often hear of this person or that person who chooses to be gluten free. It has become the latest fad diet. But for those of us with celiac, removing all gluten truly is our medicine.

Sara shared, “Trust me. I would love to have a grilled cheese sandwich or pizza with real bread that doesn’t taste like cardboard! My energy has increased. I feel like my outlook on life has changed for the better because I no longer have the brain fog draining my energy every day.”

While she hasn’t found the right bread or pizza—yet (although I’m confident she will) she says this diet is getting easier and easier.

Great Friends!

Food was limited during a recent hospital stay. Sara said she was offered a Lean Cuisine entrée from the freezer and lots of pudding and fruit. Amazing friends, however, have provided her with loving support. They brought her a gluten-free pizza on the night she was diagnosed. Pure gold!

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Be sure to request celiac tests before removing gluten from your diet.

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